Devastation and Appreciation

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( The MRI )

A repost From the Archives of a past blog:

Originally written February 3, 2011 about the time my daughter got her first diagnosis

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It’s kind of funny how when you go through something really difficult, especially in reference to your children, at the time you think ” This is so hard…I cannot imagine being able to go through anything harder than this. “

I mean you know other people have it harder or have bigger things they are or have dealt with ( although that isn’t much comfort ),for you…the current situation seems like its the biggest deal ever……at least in YOUR life.

until you get handed something else that ‘tops’ that….and then you look back at what you stressed over before and wish that you could go back to when it “wasn’t that bad “…

I have had quite a few moments like this with my oldest….the devastation of finding out that what you knew before and were trying to come to terms with, was only the TIP of the iceberg. Feeling like, just when you had learned to accept that life was going to be a little different than what you had imagined for you & your baby girl….you are then forced to confront the reality that it may be even different than what you had learned to accept!!!

It wasn’t long after I got the news that my oldest daughter was blind in one eye that we went for the recommended MRI. For me, this was just something routine that needed to be done, since the optic nerve and the brain were so closely related. I mean what are the chances that after finding out my daughter has ‘ one thing wrong ‘ that I was going to find out something else, right? She was partially blind…that’s it…that was ‘ the thing ‘ that we got handed. Everyone gets handed something in life to deal with and so the blindness was hers and mine…end of story…move on… I was more an anxious mess about the idea of sedating my daughter for the MRI, than the thought of the results.

Once I stripped her down in the little room behind the privacy curtain, I came out to the woman in charge of the sedation. I remember my daughter being squirmy and fidgety, frustrated I am sure to be stripped down to just a diaper in a chilly unfamiliar room.

I listened closely while the woman explained to me that they would be giving her some medicine orally that would make her sleepy for the procedure. This was because she was so young, it would otherwise be impossible to get her to be still for the MRI.

With my daughter on my hip, I signed some papers with one hand and then watched as the woman poured the necessary dosage into a small cup. She started the cup towards my daughter in hopes it was going to just be that easy…..but of course it was not.

It seemed like forever that we wrestled with her as she squirmed and began to cry, refusing to take the liquid. I felt horrible. I knew she didn’t understand. I hated restraining her. Finally after a few times spitting and a good portion of the liquid racing her tears down her face…the woman was satisfied with what we were able to get IN her.

” That should take affect pretty quick,” she said kindly ” I’ll be back to check in a few minutes.”

I nodded and then proceeded to walk around the room with my daughter cradled in my arms rocking her frantically while she continued to scream.

” shhhh….its okay,” I soothed ” all done….its okay.”

It seemed as though there was no comforting her. She was hysterical and I was near tears myself.

I was beginning to think I could not contain her any longer, until all of a sudden……SILENCE.

I looked down at her big brown, glazed over eyes, getting heavy and felt her body becoming limp, dead weight now in my arms……and then just like that……she was out. Head hanging limp over one arm and legs dangling from my other.

It happened just in time. Perhaps I would have dropped her, had the fight continued much longer…but for some reason seeing her in this state made my heart hurt. I can’t explain it really. I mean I had seen my daughter sleep a million times. I had stood over her crib many nights and marveled at this beautiful creation while she slept, listening to the rhythm of her breaths and smiling.

 This time was different though. It felt like someone had just sucked the spirit right out of my bubbly, happy little girl…and it made me feel a little empty and sorrowful inside. Like I had consented to giving her over like a sacrificial lamb, for the doctors to now do whatever they needed while she was completely unaware. Something about it, just felt wrong.

I had not yet mastered the art of hiding my emotion as a mother, since this was my first child and she was still very young, so when the woman came back she could see the tears streaming down my face.

” awww, honey,” she said sympathetically ” she is just sleeping. “

” I know,” I replied suddenly feeling silly & forcing a smile.

Her father and I were lead into the MRI room, where I laid my limp daughter on the table. I stood silently as they began to Velcro restraints and things on her head to hold her in place in case she did wake up unexpectedly. I just wanted to push them away and snatch her up and tell them to forget the whole thing….but I knew it had to be done….and I knew that it would be over with soon and then we could leave this day behind us and go one with our lives.

Fortunately we were able to stay in the room while she was having the MRI done. We were given chairs seated away from the machine and I was grateful to not have to leave my baby alone…whether she knew I was there or not.

It seemed like forever sitting there, silently through the loud roars of the machine that had engulfed my baby…..waiting and praying that they finished before she woke up. I remember shedding a few tears even then, thinking about how this wasn’t exactly one of the things I pictured doing with my child when I was rubbing my swollen belly many months before. Even her father was melancholy through it all. No one could escape the helplessness. Perhaps he had more ‘ what if’s ‘ about the impending results than I did. Who Knows? None of that had even occurred to me. All of my emotion was invested in this moment…A moment that would prove to be ‘ no big deal ‘ later on.

After what seemed like a lifetime (but I’m sure was no more than 45 minutes ), the machine began to slowly ‘ spit my daughter ‘ out. The staff came in ready to unstrap her and give us permission to take her to a quiet room until she ‘ came too ‘….but just as they finished the last strap she raised straight up & began talking ( I don’t remember the words ) as if she had never been asleep at all. It was crazy and made all of us laugh surprisingly. I wondered had she been awake for a while and just incredibly cooperative….but knew from her ‘ go go ‘ personality that this was probably not the case. I guess it was just what we call ” Good Timing. “

and so that was it…. we were told to make an appointment with the Neurologist who would go over the results of the MRI with us. No problem…big whoop….just thankful to be finished!!!

It was a few weeks later that we headed back into the city to meet with the neurologist. We were all in good spirits and ready to be told the standard ” everything looks good ” so we could put it all behind us. What a pain, to have to travel so far and wait for so long for what was sure to be “nothing.”

Of course, most of the “appointment ” was spent in the waiting room trying to keep my now crawling child entertained and safe. In the stroller. Out of the stroller…pick up…put down…. this in itself was exhausting.

At last we were called into a little room to meet with the doctor. Here the biggest challenge would be figuring out how to squeeze us all in with a stroller.

Here is where things get vague for me….Not enough information recalled to tell much of a story…just pictures in my brain…flashes of emotion…snippets of the Doctors rather emotionless speech. SHOCK.

There was nothing routine about this. We were being told that in fact my daughter’s brain DID NOT look like every other normal brain they have looked at.

I remember standing there with my daughter on my hip. The world seemed to have stopped. My head suddenly felt ‘ foggy ‘, my knees week and my cheeks flush. I wonder now if my jaw was on the floor as the doctor spoke, because it felt like it.

” Septo Optic Dysplasia…but partially so, it seems.” she said. ” so, her prognoses is unknown right now because she is still so young “

Most of what she said after that sounded like the grownups on Charlie Brown for me…except that the word ” retarded ” seemed to come out clear as day and jar me from my hypnotic state.

” Oh, ” I said optimistically ” so you mean she may just be a little slow..need some extra help….like learn a little slower than everyone else right? ” Okay whatever…I thought…my kid is not going to be Einstein….so what.

” no I mean she may be retarded,” she repeated ” there may be things she just CAN’T learn.” I think that was the first time i ever really realized what the literal meaning of the word was.

In the midst of her ‘ business as usual ‘ demeanor, the Doctor must have noticed something in the way I was looking at her because she then said ” I’m only telling you guys this, because if you look it up on the internet, this is what you are going to read.”

It was in that moment that I ( and later found out her father too ) had the light bulb go on in our heads that said ” YOU CAN LOOK IT UP ON THE INTERNET?????? “

” Do you have any questions,” she asked us. By now there were tears streaming down my face. Questions??? What the hell questions do you ask about something you have never even heard of??? I knew I probably had tons of questions….I just didn’t have a clue what they were in this moment. I was still trying to process that my daughter was being diagnosed with a brain malformation…I had no room for questions……besides…the internet would answer those right?

Somewhere in the conversation I’m sure I was given directions as too how to proceed when we left…otherwise I’m sure a trip to an endocrinologist would have never occurred to me….but like I said…looking back, there isn’t much ‘ order ‘ to what I found out that day. It was like an outer body experience.

The next thing I remember is being home, settling our daughter in and then heading straight for the computer.

The things I came upon and read made me stomach sick with fear. Children in wheelchairs unable to walk, children who were completely blind and unable to do very much on their own and some children had even DIED with what I was being told my daughter had, due to hormone issues. I was stunned!! I’m sure that i was never told this was something I needed to worry about!! In all the distorted words and muffled dialect, I was positive that I would have heard anything pertaining to DEATH!! Were they ‘sparing ‘ me that possibility?? I needed to know exactly what this all meant…

Frantically I ran to the phone and dialed my daughter’s doctor who had received the report from the neurologist the same day we got the results.

” Is my child going to die,” I asked trying not to sob out loud……

The Doctor spent some time on the phone with me. She was clearly, being a relatively new doctor, hurting for me also. She did her best to comfort me, but also acknowledged the fact that what my daughter had was rare and so she didn’t know too much about it just yet. She assured me though …that since my daughter was only lacking one of the parts of the brain that justifies such a diagnoses (as opposed to the larger section that is normally missing) that it was highly unlikely that she was at risk of some of the more significant symptoms of the disorder.

I cannot tell you much more about that day……Most of it is a blur…except that it is one of the only times I saw her father cry. I can tell you that from that day on…life completely changed for us…

Life became consumed with doctors’ appointments, lab work, testing, worrying, waiting….finding out one hormone issue after another….reading, researching……

I changed……..I was angry and appreciative all at once. Angry that GOD couldn’t just let me have a “normal ” baby. I mean hadn’t I suffered enough growing up in such turmoil with my mother’s alcohol abuse? Hadn’t I ‘ paid my dues ‘ for life struggles already???!!

There was also the awareness and appreciation of the ‘ little things ‘ in life. So much more joy in daily accomplishments, no matter how small. I became so much more aware & thankful for every developmental milestone, every glance she made my way, every smile, every laugh…You never know how much you take for granted…..how much you just go through life without thinking much of these precious things, until you are told that your child may not be able to do any of them……

and in that I found the comfort I needed when I was angry and asking GOD  ‘why’.

Perhaps my daughter was given to me this way to teach me something…..to make me ‘ stop and smell the roses ‘, to make me appreciate the ‘ little things ‘ in life. Perhaps all of this, even in its hurtful moments was more a gift than something to be mourned…..A gift to me….a chance to make me a better mother….

Maybe…just maybe my daughter was specifically sent to me….To make me a better person….and in the moments that I hurt and ask “why “….I take some comfort in knowing that she has done exactly that. Without her…and everything that has come along the way (Good and bad) I would not be who I am today….and so it is in knowing that….I am able to appreciate what has been handed to us and move on…

To My High school English Teacher

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My last school memory of you was graduation. I had finally received my diploma after 4 years that went from feeling like they would take forever to complete, to suddenly feeling on that day, like they all went by too fast!!

 

 The moment we threw our caps in the air in celebration was bittersweet to me. The pride that I felt in myself for my accomplishment was astounding, but I could not deny the twinge of sadness I felt at leaving it all behind. It was time to walk away from one of the few things in my life, at the time, that I was sure of. A place where I thrived academically & had finally found my place socially ( It took a while for that last one ). A place that even in all my teenage insecurities, I had finally found some sense of confidence, if only in those 6 hours, in those narrow halls, laughing with my friends or in the confine of your classroom in particular.

 

Of all of my teachers, of all of my classes, I loved you and yours the most. In that hour, I felt like I was more true to myself than I could be anywhere else at that time in my life. In your class I felt inspired. In your belief in me and what I was capable of, I felt gifted in a way that I did not, could not, feel outside of those walls.

 

 Writing had always just been something I did. It seemed it had always been a very big part of who I was ( I remember as early back as 3rd grade writing a story that my teacher spoke of trying to have published in Highlights magazine ). 

 

I had always thrived in my English classes & in my ‘less than popular’ years in school English class seemed the only time that the other kids wanted me on their side in group activities ( I never was the kid picked first in gym ). 

 

I enjoyed English and literature classes. Interpreting poetry in ways that most of my class mates could not fathom. Reading various authors and realizing how powerful the written word could be. Learning from these things. Writing and sharing a side of me that I mostly hid from the world outside of school. I knew that writing in particular was something I was good at. I never felt I was ‘ pay attention to me ‘ good at it, but I knew that it flowed from me naturally like a river into the sea and that this was not something that came so easy to just anyone. Words just came to me. In a world where much of what was going on in my life I kept to myself, writing was a way for me to release things that I thought ( even if somewhat entertaining for others to read ) that only I could interpret and get something from.

 

You and your class took what I knew to a whole new level. I would write for assignments or speak on something we had read and see the way that you intently payed attention to my every word. I would see in your eyes, tell in your tone, that you thought I had something special and it made me believe that it was more than just something I was ‘ capable of doing more easily than some ‘, but that it actually was ‘something special ‘. 

 

In the past, other teachers had appreciated things that I had written and even raved about certain things. Many of those teachers had great impacts on me too & looking back, contributed a great deal to the ‘writer ‘ inside of me; but for some reason, you, out of all of them had the most impact on me. There was something different in the way that you listened to me, spoke to me, read what I had to say ( so much so that I boldly handed over a small, very personal journal of  poems I had been writing since 8th grade for you to read ). You out of all of my past teachers made me feel more than anyone, that I had something to say and something to give the world and that it mattered and should be written and that one day it would in some way, just maybe,  make some kind of difference somewhere down my road of life. You of all people seemed to understand that it was not only something that I enjoyed doing, but something that I NEEDED to do.

 

On graduation day, you handed me a blank book with a beautiful, seemingly poetic, black and white photograph on the front cover and I will never forget your words as long as I live. ” Keep writing “; Those words and that book meant more to me than you could possibly know.

 

I did keep writing after that. I walked away from high school and began my life as a ‘ grownup ‘ with that little book, filling it with the poetry of my existence. My words changed, became ‘grownup’ as well and sadly, more often than not, as dark & unsettling as the times in my life that they were written; but I kept writing, and thought of you many times when I read through past entries. I nearly filled that book ( which I still have tucked away on a bookshelf in my room ).

 

Over the years, through all of my trials and tribulations, through my accomplishments & my content, I wrote. As time has passed and I have had to take on the care of two children on my own and face challenges that even in my darkest past I could not even imagine, the flow seems to have slowed. I find myself often frustrated at my desire to write, but seemingly inability to do so. 

 

It still, even when I am not actually writing, remains a part of me . No matter how much time goes in between what I conjure up in my head and what I actually write down to be read, I have always felt that it is a very big part of who I am.

 

So I want to say thank you to YOU for making me feel like it mattered & solidifying the feeling that it is a part of who I am. I will keep writing. I will write because I enjoy it & because I need too, but I will also keep writing because you believed in me and what it meant to me enough to encourage me to do so. I will keep writing, in part because of and for you!!!!

 

Forever Grateful,

I am posting the comment that the teacher for whom this was written for tried to leave but couldn’t get to save. She screenshot it and sent it to me. It means a lot to me so I wanted it on the blog post. Hopefully it can be seen or zoomed in on. 🙂

Back Then

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A very small glimpse of life as I first remember it

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My earliest memories are when we lived in Germany. My father was in the military and stationed in Augsburg when I was very young.

I have many fond memories of living in Germany, even though I had to be only 4 or 5.

When we finally moved back to the states I remember looking back at my life in Germany and missing it. Perhaps it was more the innocence of my age than the actual place.

I recall my father spending a great deal of time with me then, since I was the only child until shortly before we moved to the states. Some of my memories are just photographs in my head. Pictures of me sitting proudly on my dad’s scrawny shoulders on long volksmarches ( German hikes )through beautiful fields and woods and being awarded with my very own medal for completing. My father loved taking pictures. Looking at some of the beauty in them now almost makes it hard to believe that I really existed in their presence. Images of meadows, and fields and old castles that a little girl could only imagine were captured by my fathers camera.

I have pictures in my head of jumping in my fathers arms when he would return from work and anxiously waiting for him to sit down so that i could unlace his army boots and use all my little might to pull them off. I remember him coming home once and surprising me with a colorful pinwheel that I would lift above my head to the wind and watch all the colors blend into one.

My father used to read to me. For some reason I vividly remember a book about mermaids that he would sit on the edge of my bed and read a chapter from each night before I went to sleep. I was comforted by his deep, masculine voice and I ate up all the attention I could get from him.

Dad was in charge of getting me dressed and ready to go to the hospital the day my little brother was born and I remember meeting the new addition with quite an interesting outfit and hairdo that my mother scolded my father for & insisted on fixing from her hospital bed!

Looking back I definitely would say I was a Daddy’s girl. As long as I can remember I have been ‘ punkin ‘ and even to this day if he calls me by my name I think i have done something to upset him.

I often wonder when I think about my own daughter’s relationship with her dad in her first years.. if my relationship with my dad was based on my age, the fact that I was the only child for a while or the actual bond that I felt to my dad. Is it just a given that a little girl is all about Dad and he all about her when they are very little or is it something bigger and more magical than that?

When I think of my later years as a kid I can no longer remember feeling as much like daddy’s little girl as I did in those days that we lived in Germany. I don’t really remember even craving it either. There came a time that it seemed he was around alot less, whether it be physically because of military tours or emotionally. At some point as the years went on and my brother came into the picture, I adapted to his absence and I became my mother’s lil sidekick. As a mother myself now, I am aware that parts of my relationship with my mom, even early on, were unhealthy. I became her best friend in a lot of ways, even before I totally understood the concept of friendship. I think I became the one person that my mother knew would always be there and so sometimes the line between parent and friend was blurred as I got older.

We moved back to the states in the fall before my 6th birthday. I know this because age 6 is the first and only birthday party I ever had with some childhood friends who’s fathers had coincidentally been stationed in the same area as my father from Germany.

My most vivid memories start here. Growing up on a military base. Me, My mom, my dad and my little brother. We lived on a small dead end street called Shiloh Street in a 3 bedroom apartment for most of my childhood and some of my teen years. We were not the military family that moved around alot, so instead of having to learn how to adapt to new surroundings all the time like alot of military brats ( as we are so affectionately called ), I learned the art of saying goodbye. Over and Over I watched people move away, neighbors rotate, and friends wave from moving trucks. It’s just the way it was, but I had no idea at the time how this would shape the person I have become.

Overall though, I was content in my sheltered little life on the base. Free to roam the neighborhood and play until the streetlights came on.

As time passed though and my brother began toddling around, my roll in the family changed from whatever it was, to ‘big sister’. I didn’t like this roll since it cut into my freedom at times. Confined to the backyard on hot afternoons to watch my brother who was about 5 years younger than me. Forced to allow him to tag along whenever I did get the opportunity to leave the boundaries of the fence. I hated it and I resented him for it lots of times. Looking back as an adult, I know now that he looked up to me…but as a child, I just wanted him to GO AWAY!

My life growing up was filled with many things. Laughs, cries, smiles and tears. Some of the moments I remember thinking were so bad, could not have prepared me for the moments that would come that were worse….and some of the earlier memories of good times would be nothing compared to the good ones I would and continue to make.

Just a thought….

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Sometimes you do something with best and purest intentions and then you look at the situation and constantly wonder if you did the right thing. Good intentions or not…..the decision you make for your children for example affect them for the rest of their lives. What if good intention just isn’t good enough?

Dear Lil Mama..

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A repost From the Archives of a past blog:

A few years ago I had a blog that I wrote in frequently. It’s main focus was my life raising two girls alone and special needs, where as this one will be a potpourri of topics. I know I haven’t written anything in a few. Writing for me is something I get a spark to do. There is no plan or schedule….so be patient with me.

My youngest will be 17 tomorrow. In searching through past things I have written, I came across this and decided in honor of her birthday I would share it again.

The only difference in the person she is, is that she is even more amazing, resilient and compassionate. She’s still wise and mature beyond her years, even at 17. I don’t call her lil mama anymore ( even though she still has a natural caretaking nature about her and tries to boss me around out of concern 😉 ). The nickname that has always stuck was ” Mini Me”…and that is who she is today except so much better. 

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This is a letter I posted when she was 11 years old…( I was younger too…but we won’t get into that ). So imagine this child you are about to read about being even greater than she was then!!!! I am a very lucky mother.

Sidenote: Her sister is now 20 and the bipolar diagnosis has changed to schizoaffective disorder

We have had some tough conversations lately. Mostly centered around your sister and her struggles and triumphs through dealing with Autism and Bipolar.

 

I am in awe of your maturity at 11 years old and even saddened by it at times. I never imagined you would grow up so fast. As a child of an alcoholic I know just how it feels to be more adult than your peers. To feel like you live in a world that no one your age could even begin to fathom. It can be lonely and it can be frustrating to be the one kid who thinks about things most kids your age cannot even imagine. More than anything though I feel pride. Pride in your understanding and compassion. Pride in your willingness to learn & teach others. Pride in your awareness and your desire to spread it.

 

In the last couple of weeks I have learned more about how autism has affected YOU than I ever knew. I have realized just how much you love and worry about your older sister. This is were the sadness strikes but more so when I get a warm fuzzy feeling in my heart.

 

So many times I have felt guilt for what you have had to witness and go through as a result of being a sibling of special needs. I have cried and wondered so many nights if you would grow up and resent me or worse your sister for the sacrifices you have had to make. Talking to you ( as recent as last night ) reassures me that you will not. That more than anything you are filled with concern, love and a desire to protect your family even at such a young age.

 

You talk a lot about feeling like ‘ people do not understand ‘, about the frustration of having a sister who is so high functioning that your friends reply in disbelief when you reveal to them that she has autism. I have tried so hard to ‘ keep you young ‘ in the face of adversity, remembering how much my own mother carelessly exposed me too and threw on my plate at a very young age by the things she said and the things that I witnessed. I became the other adult in my scenario very early and I have been careful not to place that burden on you. I admit though that I find myself at 37 years old feeling, maybe wrongfully so, feeling that I have somewhat of an allie in my 11 year old. After years of being a single parent and feeling like no one ‘ gets it ‘ as far as what life is like personally behind our closed door, it is almost a comfort. I have missed having a spouse for many years ( not because he was anything to write home about ) because it was one other person who was ” there “, who was living it all with me.. I have realized in the last year that you have become that partner in a way ( not like a spouse because that would be creepy ) in autism for me.

 

Halloween night we had a few hours where your sister was attending an autism event with our local resource center and we talked a lot about the difference in the two of you. You were so candid. In one breath expressing the understandable, age appropriate jealousy that you feel at times from all the attention it seems is focused on your sister because of her special needs, and then in the next breath, through tears, aging almost 10 years when you spoke of your heart hurting for her social struggles and your worries for her future.

I was in awe that at 11 years old these things were on your mind.

 

Last night we spoke again after you discovered the character of Max on an episode of Parenthood I was watching when you entered the room. You were mesmerized by Max and spoke many times of the relatability in his character and how much you loved to see that portrayed on a tv show. We giggled at parts & were silenced by parts that mirrored life with your sister. A life that we both have often felt like no one understands.

 

It was refreshing in a way to me though. To sit and watch a show and have someone else beside me who understood why certain moments touched me or made me laugh. Someone who even though she could not ever see my perspective as the mother in this situation, wanted too and wanted to let me know in whatever way she could that we were ‘ in it ‘ together.

 

I worry. I worry all of the time. I feel as though a child your age should not know so much, should not be worried about the things that you worry about and I am often times feeling apologetic for the life that you were brought into ( not just with autism & bipolar & her medical diagnosis, but with no dad really & our financial struggles ) but more than anything I am proud of you and the person that you have become and the woman you will be. You say all of the time even after all you have witnessed and been through that you would not want to have your sister without her autism. You have said countless times that you don’t feel like autism is necessarily a bad thing ( although you very much understand it’s struggles ). You have told me so many times that ‘ this is my sister’ and that you wouldn’t want her any other way because you love her for every part of her & that the parts of autism that have shaped her personality and who she is are parts that you would not want to see her without, because like me, you love the person and you appreciate the gifts that it has brought her in spite of the struggles and the gift that it has been to us amidst the chaos that it has often brought to our lives. We love her just the way she is. Autism and all.

 

Last night when I tucked you in you said that you worry about her future. This shocked and saddened me and I could see in your little face the concern and love. I was surprised to hear this from you. Something that I have felt every night that I lay in bed. I listened to you speak waiting to hear you talk about your worry about there coming a time that YOU will need to be her guide in life or how it may affect YOU….but you never did…Nothing that you ever said had a selfish ( which would have been fine & appropriate as a sibling in your situation ) tone to it. Your concern was only for your sister and HER future, not your own. All I could think was ” wow…she feels exactly how I feel..maybe to a lesser degree…but she gets it “….

 

I hate that you have grown up so fast and that you are faced with issues in your head that seem much more serious than that of your peers, but I also take comfort in knowing what a wonderful contribution to society you are because of it all and that makes me so proud….and just as I am proud of you for all of that, I revel in your happiness and love to see that you still have those very innocent child like traits when you run out my door to play or climb trees or when you make goofy faces and laugh at silly things like the rest of your peers. I hope there is always a balance of who you are as your own person and who you are as a sibling.

 

Love Always and Forever,

 

Mom

 

P.S. Don’t worry so much baby girl…I GOT THIS 😉

Once Upon a Time……

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I was married once………………. Just typing those words is weird for me. It doesn’t feel like I personally was married at one time. I was such a different person. That is so far in my past and I am so disconnected from it that when I speak of it, I feel like I am talking about someone else; and in a way I am.

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I am not really one who subscribes to the notion that ‘everything happens for a reason’ or that ‘every shitty situation is a learning experience’ or any of the faith-based sayings that people use to explain things (I admit, I am not a religious person at all). I believe some of those things in certain situations. For example, I believe SOME things happen for a reason. I also believe that sometimes, shit just happens. There is no reason and I have learned that if I try to find a reason for everything, I drive myself insane.

My marriage though, whether it was supposed to be or not, was a lesson; was a growing experience. It was a shit show, but I am so different now than I was then. Good and Bad. When I think about it now, I cannot believe I was ever even married to that man. The woman I am now would NEVER. That change in who I was and who I am happened slowly and then all at once. I feel like the day I decided I was ‘done’, I morphed into this different person; or maybe I just went back to being who I had lost before the relationship.

I remember once he realized that I was serious and was moving on (no one ever thought I would. I was with him for 10 years, 2 kids and had put up with a lot and stayed) he suddenly became interested in saving a relationship where he had not invested any time in saving before. He would plead to get back together. One day I turned to him (we had been split for a year) and I said, “You would not like who I am now.” He seemed baffled. To him I was the same woman standing in front of him as I had always been..on the outside. But on the inside, I was different. I was determined, I was protective of my children and my wellbeing, I was smarter, and I was fed up.

“What do you mean,” he asked as if he was confused (although confused seemed to be a permanent state of mind for him back then: insert eyeroll: )

“You wouldn’t like who I am anymore. I am not the same dumbass that used to put up with your shit”.

He looked shocked and slightly defeated. So many times, I had been manipulated, emotionally broken down, I know there was a sense of panic in him realizing, this time, I was really done. There was no turning back. That’s when things got ugly of course…but I won’t get into all of that right now.

It takes a lot for me to give up on a relationship. That hasn’t changed about me (as I am working on letting a current situation go years later). That has always been a strength and a weakness about me. I don’t give up on relationships easily, but I also put up with way more crap than I should because of this, always hanging on to hope that things will get better. But, when I finally am done and decide to walk away, that’s it, I am done and there is no turning back. This usually stuns people because I come off like the ‘sure thing’. The girl you can take for granted because I will always be there. Its frustrating honestly that my loyalty has put me on people’s back burners so many times…but there is also something incredibly satisfying once I am able to walk away. To know that you are looked at as weak and that someone thinks they can treat you however they want is painful, but to get to that ‘fed up’ point and walk away is empowering. To show them that I don’t NEED you (as much as my loyalty makes me seem needy), I wanted you, I wanted to make it work, I am a fighter, but I also will eventually wave the white flag and walk away. To know what was never expected of me is exactly what I was finally able to do, feels good.

I don’t have great self-esteem, thanks to a lot of emotional abuse growing up. So that I think is partly why I hang in so long. Why I accept things I shouldn’t. I’m emotional. I cry. I’ll stay. I’ll put up. Especially where my kids were involved. I think he took advantage of these weak qualities in me. The sap in me. The hopeless romantic. The one who wants to be loved.

Even the nicest (or dumbest, whatever I was) person gets tired. One day I woke up after a hellish period in the relationship with the awful words he had said to me over the years, ringing in my head. “I would have never married you had I known what I know now.” “No one is ever going to want you with two kids, one with special needs,” “You’re just like your mother,” “ what you won’t do for me someone else will,” and all of the times I had been left alone while he bar hopped. I laid there and thought about who I was. I had been a devoted partner. I worked full time, I cared for our children, cared for his children from a previous relationship, cooked, cleaned supported him through a mental break down, etc. I wasn’t perfect, but I realized, I didn’t deserve the way I was being treated. I didn’t necessarily think “I can find someone who treats me better” because honestly at that point I didn’t care if I saw another penis again, that’s how done I was! But I also didn’t have the self esteem to even think anyone else would want me (still struggle with that), but I didn’t care. I was consumed with a 6-year-old with special needs child and a toddler. They were my life, they were all I needed. And so finally, much to his surprise, I ended it and kicked him out.

I remember he didn’t take much stuff. I know he thought I was bluffing, but I wasn’t. I had two girls to raise, to set examples for. I was no longer going to let them see me emotionally beat down by a man they called daddy. I felt like even at a young age, they needed to be shown that you don’t ever have to feel stuck!!! Yes, I would have less, I would struggle, but I will have been damned to stay in that any longer.

As time went on he would call to tell me he was coming to take the tv, or the bed or whatever else he felt belonged to him and would leave me with very little.

I will never forget one of these phone calls when I had just had enough of him thinking he was hurting me with STUFF. “TAKE IT,” I yelled “Take whatever you want from the house, I don’t need it. Just leave me my children and GO!”  That is all I cared about. My girls. I didn’t need anything else.

After that I started boxing up his stuff and giving it to his friend to deliver to him. I felt free. I felt strong. I felt ALL SET.

A lot happened after that (I’ll save that for other posts) but from then on it was me and my girls who were 6 and 2 at the time, against the world. They are now 20 and 16. Every struggle I went through with that jackass was worth it only because I got them. So, take your shit, take your ego. I have my girls. I got the better end of the deal.

“Oh.”

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Have you ever had a situation that you feel bad about not feeling bad about? Something happens that most people, (that you) feel you should feel bad about and have in the past, but after a while you just become numb to it?

I have a daughter with special needs and pretty significant mental health issues. She is currently at 20 years old staying in a group home nearby. It was thought to be a chance at some structured independence and the best thing for my family and her. I question that choice often, but that’s another post or 10, for another time.

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Raising my oldest alone with so many needs has been one of the hardest things I have ever done in my life and with her illness came crisis’s and ER visits and hospital stays, sometimes for weeks. These were often heartbreaking, emotionally exhausting and traumatic for me. They often followed some major “episode” that involved attempts at self-harm, harming me, threats and just out right chaos.

At 20, I cannot even remember how many times my daughter has sat in an ER for hours with me by her side and then transferred to some sort of mental health facility. It’s draining. You are filled with guilt, hurt, hopelessness and loneliness and still having to think about the other child (who you probably had to dump with a neighbor) and what they have witnessed and been through. As time goes on, all these feelings often come with some anger. Anger at your child (right or wrong), at the system, at the world and this life in general.

I recently got a call from a crisis management person that my oldest was sitting in the ER awaiting transfer to a stabilization unit because she attempted to “jump out a window”. I put this in quotes because my oldest can be a master manipulator and many “attempts” in the past have been more strategies to deflect from a situation she might have been called out on or just a need for dramatics and attention when things are too quiet in her life. I’ve never really feared that she WANTED to kill herself. I have more feared that in her impulse to threaten or make a scene that she would ACCIDENTLY harm herself, because in those moments I do not think she thinks about the possible irreversible consequences to what she does ( for example, accidently actually falling out of a window because she is hysterical and sitting on the ledge or accidently stabbing herself or me in a struggle because she impulsively grabbed a knife). I also often worry about her someday actually being serious and doing something terrible, because let’s face it, her mental illness puts her at a higher risk for suicide. As a mother I cannot tell you how scary that is. How many nights I have laid awake thinking one of these days I am going to lose her. That I could very likely outlive my child. Some may think these are morbid thoughts, but this is life with my oldest and has been for a very long time.

At this point in her life, and at the advice of her therapist who has walked with us on this journey since 2006 (I always say if anyone knows my oldest as well as I do, if not better it would be her therapist. She’s amazing) I have been trying to step back a little bit. This has been for my own sanity and for my oldest to learn to manage her mental health on her own and navigate getting help when she needs. It also, to be honest, is an effort to show her that the world cannot stop (like it used to) every single time she can’t handle life. Now don’t think me insensitive. I deal with depression and anxiety. I get it. I get the need for support and what not and my oldest has that, from me and from more people than most of us would. But there are times when she does things for attention or to manipulate and its not always easy to tell when (which is why you should always take that stuff seriously) so the less reaction she gets (from me especially) the less this has become her “go to” coping mechanism. With that said, it still happens and probably always will. There was a time it seemed one man’s crisis was my Tuesday. I didn’t even know what qualified as a crisis anymore.

So I get this call and I question the circumstances. I know the lady on the other end probably thought me callous in my questions and the tone I had. When I hung up the phone, I remember staring at the TV. I really felt nothing major. No tears, no sadness, no anger. I felt more like you feel when someone tells you that you’re having left overs for dinner. “Oh…again”. Suddenly I was overcome with a feeling I am all too familiar with, so much so that its been joked it should be my middle name. GUILT. I felt guilt. Not guilt that I had done something or didn’t do enough (I live with that kind of stuff daily) but I felt guilty that I did not feel sad or concerned about the fact that my daughter was sitting in an ER 20 minutes away, waiting for a bed on a crisis unit. It has gotten to the point where my main concern is knowing where she is and since I knew that, I was “okay”. I knew I would probably hear from her at some point.

So, I just sat there in my guilt. Shouldn’t I be sad? Shouldn’t I feel badly that my daughter is in crisis and I am not there? Am I a bad mother? A heartless mother because I am no longer phased by these types of phone calls. Worse, am I a terrible person for actually dreading the phone call from her once she was placed? I thought how insane it was that this was my “normal”. I mean what the fuck? Why is this NORMAL? I wondered if any other mothers feel the way I do. I felt really alone.

In the past when the hospital visits started (around 12 years old) and kept happening, I would be plagued with hurt and sadness and exhaustion and a little anger. I would sit in ER rooms with her for hours after she had flipped our household upside down, watching her sometimes behave as if nothing happened as she sat in the hospital bed watching tv, while I squirmed in hard chairs, surrounded by security, playing on my phone through the blur of tears. Times I would have to leave to tend to my youngest and cried at the position of being torn between the two. Leaving my oldest alone but also hurting for my youngest who had been left to process the situation on her own. Pulled in two directions and wanting to do what is right by both girls. How do you do what is right when you don’t know what that is ?

Now, my oldest doesn’t live here anymore. Other people are the ones that make the call to transfer her, other people deal with the dramatic displays and the scary situations she puts herself in. Trust me, I feel guilty for that too (told you it should be my middle name). I feel so removed from it all now. It’s a weird feeling. It’s not a motherly feeling. It’s not that I don’t care. This is my normal.

This kind of stuff should not be ANYONE’S normal. I sit, I think, I wait for her call. I speak with her briefly. She sounds alright. The conversation is awkward. I tell her I love her and we hang up and again I sit staring. I feel awful. I feel bad. But what I feel bad about is that I don’t feel bad about the situation. What kind of person does that make me?

When her sister gets home, I say “Your sister is in the hospital again”. Her response? “Oh” and then moves to the kitchen to get a snack. That’s it. That is both of us. “oh”.

I never in a million years, the first time I sat in an ER with my child, crying and beside myself, yelling at people to do their jobs, feeling like I would collapse from exhaustion, thought that I would someday feel nothing but “Oh”.